Eastern Kentucky UniversityEncompass

Online Theses and Dissertations Student Scholarship

January 2012

Preliminary Validation Of The Childhood AutismRating Scale - Second Edition Questionnaire ForParents Or Caregivers (cars2-Qpc) And TheGilliam Autism Rating Scale (gars-2) With AChinese-Speaking PopulationNannan LiEastern Kentucky University

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Recommended CitationLi, Nannan, "Preliminary Validation Of The Childhood Autism Rating Scale - Second Edition Questionnaire For Parents OrCaregivers (cars2-Qpc) And The Gilliam Autism Rating Scale (gars-2) With A Chinese-Speaking Population" (2012). Online Thesesand Dissertations. 69.https://encompass.eku.edu/etd/69

PRELIMINARY VALIDATION

OF THE CHILDHOOD AUTISM RATING SCALE – SECOND EDITION

QUESTIONNAIRE FOR PARENTS OR CAREGIVERS (CARS2-QPC) AND THE

GILLIAM AUTISM RATING SCALE (GARS-2)

WITH A CHINESE-SPEAKING POPULATION

By

NANNAN LI

Doctor of Medicine in Psychology

Xinxiang Medical University

Xinxiang, Henan

2005

Submitted to the Faculty of the Graduate School of

Eastern Kentucky University

in partial fulfillment of the requirements

for the degree of

MASTER OF SCIENCE

May, 2012

ii

Copyright © Nannan Li Graduate Student, 2012

All rights reserved

iii

ACKNOWLEDGEMENTS

I would like to sincerely thank Dr. Myra Beth Bundy for her guidance, wisdom,

and encouragement. I feel honored to have had such a wonderful mentor. I would also

like to thank the members of my thesis advising committee, Dr. Richard Osbaldiston, and

Dr. Dustin Wygant for their support and expertise throughout this thesis project.

Furthermore, I would like to thank Dr. Don Beal for his help, guidance, and support

during this project. I would also like to thank my husband Fei Ma who have helped me to

recruit participants for this study and continually supported me. I would like to express

my thanks to the participants, who volunteered their time and efforts and made this study

possible. Finally, I am very appreciative of my parents and family for always

encouraging and supporting me in the pursuit of my education and goals.

iv

ABSTRACT

Autism is a neurobiological disorder that is diagnosed through careful behavioral

assessment in early childhood. Appropriate measurement of autism is essential for

determining appropriate intervention strategies. Whereas, there are only a limited autism

measures available for use in China. For this reason, valid and reliable measures of

autism for use with Chinese speaking individuals are of critical importance. The purpose

of the present study is to begin the process of developing two measures of autism for use

with Chinese speaking individuals.

The development of the measures of autism with Chinese speaking population was

started by translating the Questionnaire for Parents or Caregivers of Childhood Autism

Rating Scale – Second Edition (CARS2-QPC) and the Gilliam Autism Rating Scale–

Second Edition (GARS-2) into Chinese. The translated versions then were given to a

group of 20 Chinese Immigrants. The individual scores were examined to see the

relationship between the English version and the Chinese version. The individual scores

on the Chinese version and the English version of the CARS2-QPC and the GARS-2

correlated highly and significantly. Therefore, this study provided initial support for these

Chinese versions of the CARS2-QPC and the GARS-2. Limitations and

recommendations for future research were also discussed.

v

TABLE OF CONTENTS

CHAPTER PAGE

1. INTRODUCTION -------------------------------------------------------------------------------- 1

The Symptoms and Nature of Autism -------------------------------------------------------- 1

Social interaction---------------------------------------------------------------------------- 2

Communication------------------------------------------------------------------------------ 3

Repetitive behavior ------------------------------------------------------------------------- 4

Other symptoms ----------------------------------------------------------------------------- 5

The Prevalence of Autism Spectrum Disorders in Society -------------------------------- 6

Autism in China---------------------------------------------------------------------------------- 6

Cross-Cultural Development of Tests -------------------------------------------------------- 8

Applying an already existing instrument ------------------------------------------------ 8

Adapting an already existing instrument------------------------------------------------- 8

Assembling a new instrument ------------------------------------------------------------- 9

Influence of ICD-10 ------------------------------------------------------------------------ 9

Approach selected for this study---------------------------------------------------------- 9

Concept of Test Development ----------------------------------------------------------------10

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Rating Scales Used In This Study -------------------------------------------------------------------- 11

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale –

Second Edition (CARS2-QPC) ----------------------------------------------------------11

Gilliam Autism Rating Scale–Second Edition (GARS-2)----------------------------15

Rating Scales Used In China------------------------------------------------------------------17

Research Questions, Expectations, and Hypothesis of the Investigation ---------------18

2. METHODS----------------------------------------------------------------------------------------20

Participants --------------------------------------------------------------------------------------20

Materials -----------------------------------------------------------------------------------------20

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale –

Second Edition (CARS2-QPC) ----------------------------------------------------------22

Gilliam Autism Rating Scale–Second Edition (GARS-2)----------------------------22

Procedure ----------------------------------------------------------------------------------------23

3. RESULTS -----------------------------------------------------------------------------------------25

Characteristic of Participants------------------------------------------------------------------25

Similarity of Original and Back-translated versions---------------------------------------26

Correlational Analysis -------------------------------------------------------------------------27

Descriptive statistics -----------------------------------------------------------------------27

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Correlational analysis----------------------------------------------------------------------29

Reliability Analysis-----------------------------------------------------------------------------33

4. DISCUSSION ------------------------------------------------------------------------------------34

Discussion of Participants ---------------------------------------------------------------------34

Discussion of the Correlation Analysis------------------------------------------------------36

Discussion of the Coefficient Alpha ---------------------------------------------------------37

Limitations and Perspective for Future Research ------------------------------------------37

Limitations ----------------------------------------------------------------------------------37

Suggestions for Future Study-------------------------------------------------------------39

Strengths of the present study ------------------------------------------------------------40

5. SUMMARY---------------------------------------------------------------------------------------42

REFERENCES --------------------------------------------------------------------------------------44

APPENDIX

A. Informed Consent Form -------------------------------------------------------------------51

B. Demographic Information Form ---------------------------------------------------------53

C. Debriefing Form ----------------------------------------------------------------------------55

D. The original English Questionnaire for Parents or Caregivers of Childhood

Autism Rating Scale – Second Edition (CARS2-QPC) ------------------------------58

viii

E. The original English Gilliam Autism Rating Scale–Second Edition (GARS-2) --65

F. The back-translated English Questionnaire for Parents or Caregivers of Childhood

Autism Rating Scale – Second Edition (CARS2-QPC) ------------------------------74

G. The back-translated English Gilliam Autism Rating Scale–Second Edition

(GARS-2)------------------------------------------------------------------------------------81

H. The Chinese Questionnaire for Parents or Caregivers of Childhood Autism Rating

Scale – Second Edition (CARS2-QPC)-------------------------------------------------92

I. The Chinese Gilliam Autism Rating Scale–Second Edition (GARS-2)-------------99

J. GARS-2 and CARS2-QPC rating scale comparison in English between original

and back-translation --------------------------------------------------------------------- 110

K. Revised GARS-2 and CARS2-QPC rating scale items comparison in English

between original and back-translation ------------------------------------------------ 117

VITA ------------------------------------------------------------------------------------------------ 119

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LIST OF TABLES

TABLE PAGE

1. MEAN SCORES AND STANDARD DEVIATIONS OF THE ENGLISH CARS2-

QPC, THE CHINESE CARS2-QPC, THE ENGLISH GARS-2, AND THE CHINESE

GARS-2-----------------------------------------------------------------------------------------------28

2. INTERCORRELATIONS BETWEEN THE ENGLISH AND THE CHINESE GARS-

2 AUTISM INDEX AND THREE SUBSCALES ---------------------------------------------32

x

LIST OF FIGURES

FIGURE PAGE

1. DISTRIBUTION OF THE CORRELATIONS COEFFICIENTS OF THE ENGLISH

AND THE CHINESE CARS2-QPC ITEMS----------------------------------------------------30

2. DISTRIBUTION OF THE CORRELATIONS COEFFICIENTS OF THE ENGLISH

AND THE CHINESE GARS-2 ITEMS ---------------------------------------------------------31

xi

LIST OF ABBREVIATIONS

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale – Second

Edition -----------------------------------------------------------------------------------CARS2-QPC

Gilliam Autism Rating Scale–Second Edition ------------------------------------------ GARS-2

1

CHAPTER I

INTRODUCTION

The purpose of the current study is to develop a valid and reliable version of the

CARS2-QPC and the GARS-2 for use with bilingual Chinese or Chinese-American

parents living in the United States. The research will include translation of existing valid

and reliable measures (CARS2-QPC and the GARS-2) into Chinese, administering both

original and translated versions of the instruments to a group of bilingual participants,

and comparing their scores on the versions. The first chapter of this thesis will present

essential background knowledge necessary for a comprehensive understanding of this

study as well as the proposed expectations and hypotheses. Thus, this introduction

includes: (1) a brief review of Autism Spectrum Disorders, including a discussion of the

major symptoms; (2) a discussion of cross-cultural development of tests; (3) a discussion

of concepts of psychological instrument development; (4) a review of available research

literature on Autism Spectrum Disorders in China; and finally (5) a discussion of the

research questions and hypotheses for this study.

The Symptoms and Nature of Autism

In order to fully understand the relevance of this study, one must first understand the

behaviors and symptoms associated with Autism Spectrum Disorders. Autistic Disorder

is one of several types of pervasive developmental disorders (PDDs), also called autism

spectrum disorders (ASDs). There are three most recognized disorders within the autism

spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in

cognitive development and language, and Pervasive Developmental Disorder-Not

Otherwise Specified (commonly abbreviated as PDD-NOS), which is diagnosed when the

2

full set of criteria for autism or Asperger syndrome are not met (Johnson & Myers, 2007).

According to the Centers for Disease Control (CDC), the phrase Autism Spectrum

Disorders covers a range of disorders that are characterized by developmental delays,

sensory processing issues, and impairments in social behavior. ASDs are highly variable

neurodevelopmental disorders that first appear during infancy or childhood, and generally

follow a steady course without remission. Overt symptoms gradually begin after the age

of six months, become established by age two or three years, and tend to continue

through adulthood, although often in more muted form. The autism spectrum as currently

defined by the Diagnostic and Statistical Manual of Mental Disorders (Filipek et al., 1999)

is distinguished not by a single symptom, but by a characteristic triad of symptoms:

impairments in social interaction, impairments in communication, and restricted interests

and repetitive behavior. It is not unusual for Autistic Disorder to be confused with other

ASDs, such as Asperger’s Disorder, or to have overlapping symptoms. Other concerns,

such as atypical eating, poor muscle tone, or gastrointestinal (GI) symptoms are also

common but are not essential for diagnosis.

Social interaction Social deficits distinguish autism and the related autism spectrum

disorders (ASDs) from other developmental disorders (Rapin & Tuchman, 2008).

Individuals with autism do not develop typical personal interactions in virtually any

setting. This means that affected persons fail to form the social contacts that are such an

important part of typical human development. Making and maintaining friendships often

proves to be difficult for those with autism.

Unusual social development becomes apparent early in childhood. Autistic infants

show less attention to social stimuli, smile and look at others less often, and respond less

3

to their own name. As the child develops, interaction with others continues to be

abnormal. Autistic toddlers differ more strikingly from social norms; for example, they

have less eye contact and turn taking, and do not have the ability to use simple

movements to express themselves, such as the ability to point at things (Volkmar &

Chawarska et al., 2005). Three- to five-year-old autistic children are less likely to exhibit

social understanding, approach others spontaneously, imitate and respond to emotions,

communicate nonverbally, and take turns with others. There is usually an inability to

develop normal peer and sibling relationships and the child often seems isolated. There

may be little or no joy or interest in normal age-appropriate activities. Most autistic

children display moderately less attachment security than non-autistic children, although

this difference disappears in children with higher mental development or less severe

ASDs (Rutgers & Bakermans-Kranenburg, et al., 2004). Children with autism do,

however, form attachments to their primary caregivers (Sigman & Dijamco, et al., 2004).

Older children and adults with ASD perform differently on tests of face and emotion

recognition (Sigman & Spence, et al., 2006), especially if the faces are unfamiliar.

Affected children or adults may not seek out peers for play or other social interactions. In

extreme cases, they may not even be aware of the presence of other individuals.

Communication Knowledge about human communication is central to theory and clinical

practice in the field of autism. Milestones in language and communication play major

roles at almost every point in development in understanding autism. Most parents of

autistic children first begin to be concerned that something is not quite right in their

child’s development because of early delays or regressions in the development of speech

(Short & Schopler, 1988). Individuals diagnosed with Autistic Disorder may exhibit

4

differences in their methods of communication. About a third to a half of individuals with

autism do not develop enough oral speech to meet their daily communication needs

(Noens & Berckelaer-Onnes, et al., 2006). Differences in communication may be present

from the first year of life, and may include delayed onset of babbling, unusual gestures,

diminished responsiveness, and vocal patterns that are not synchronized with the

caregiver. In the second and third years, autistic children have less frequent and less

diverse babbling, consonants, words, and word combinations; their gestures are less often

integrated with words. Autistic children are less likely to make requests or share

experiences, and are more likely to simply repeat others' words or reverse pronouns

(Kanner, 1968). Deficits in joint attention seem to distinguish infants with autism: for

example, they may look at a pointing hand instead of the pointed-at object, and they

consistently fail to point at objects in order to comment on or share an experience

(Johnson & Myers, 2007). Autistic children may have difficulty with imaginative play

and with developing symbols into language (Landa, 2007).

Repetitive behaviors Repetitive behaviors are common in autism. The diagnostic and

statistical manual of mental disorders (DSM-IV) includes them among the necessary

criteria for the diagnosis of autistic disorder as “restricted repetitive and stereotyped

patterns of behavior, interests, and activities”. These include: a) a preoccupation with

stereotyped and restricted patterns of interest, b) inflexibility in adhering to routines and

rituals, c) stereotyped and repetitive motor manifestations and d) a persistent

preoccupation with parts of objects. All these behaviors are not always present in the

same individual and are often not stable over time. In fact, in the same person, they may

change not only in quantity but also quality and type. Intensity of behaviors and

5

topography of the stereotyped movements have been found helpful in distinguishing

patients with autism from patients with intellectual disability (Bodfish & Symons, et al.,

2000).

Other symptoms Autistic individuals may have symptoms that are independent of the

diagnosis, but that can affect the individual or the family (Filipek et al., 1999). Many

people with autism have symptoms similar to attention deficit hyperactivity disorder

(ADHD). But these symptoms, especially problems with social relationships, are more

intense for people with autism (Mayes & Calhoun, 2012). Over 90% of people with

autism have unusual sensory perceptions (Geschwind, 2009). For example, they may

describe a light touch as painful and deep pressure as providing a calming feeling. Others

may not feel pain at all. An estimated 60%–80% of autistic people have motor signs that

include poor muscle tone, poor motor planning, and toe walking; deficits in motor

coordination are pervasive across ASD and are greater in Autistic Disorder (Geschwind,

2009). Some people with autism have strong food likes and dislikes and unusual

preoccupations. Unusual eating behavior occurs in about three-quarters of children with

ASD, to the extent that it was formerly a diagnostic indicator. Selectivity is the most

common problem, although eating rituals and food refusal also occur; this does not

appear to result in malnutrition (Dominick & Davis, et al., 2007). Sleep problems occur

in about 40% to 70% of people with autism (Mayes & Calhoun, 2009). About 10% of

people with autism have some form of autism savant skills-special limited gifts such as

memorizing lists, calculating calendar dates, drawing, or musical ability (Treffert, 2009).

Although some children with autism also have gastrointestinal (GI) symptoms, there is a

6

lack of published rigorous data to support the theory that autistic children have more or

different GI symptoms than usual (Erickson & Stigler, 2005).

The Prevalence of Autism Spectrum Disorders in Society

Autism has a strong genetic basis, although the genetics of autism are complex. It is

unclear whether ASD is explained more by rare mutations, or by rare combinations of

common genetic variants (Abrahams et al., 2008). In rare cases, autism is strongly

associated with agents that cause birth defects (Arndt et al., 2005).Controversies surround

other proposed environmental causes, such as heavy metals, pesticides or childhood

vaccines; the vaccine hypotheses have been shown to be biologically implausible and

lack convincing scientific evidence (Gerber et al., 2009). The prevalence of autism is

about 1–2 per 1,000 people worldwide; however, the Centers for Disease Control and

Prevention (CDC) reports an approximate number of 1 per 110 children in the United

States are diagnosed with ASD in 2011 (CDC, 2011). The number of people diagnosed

with autism has increased dramatically since the 1980s, partly due to changes in

diagnostic practice; the question of whether actual prevalence has increased is unresolved

(Newschaffer et al., 2007).

Autism in China

China is an important nation in the world’s current events both because of its large

population and its growing economic power and influence. For some historical reasons,

there has been a dearth of scientific literature in China regarding the diagnostic features

and treatment of autism in comparison to Western societies (Clark & Zhou et al., 2005).

In 1982, Dr. Tao Kuo-tai in Nanjing conducted the diagnosis for the first children in the

country to be diagnosed with autism (McCabe, 2010). In the two or more decades since

7

autism was first diagnosed in China, a growing number of doctors have begun to

recognize and diagnose autism in children. There are still many doctors in smaller, more

remote locations, however, who are unaware of the disability or its diagnosis. This leads

to delayed or incorrect diagnoses in many cases as parents search for a doctor who can

help them. The ministry acknowledges that there are no public education programs

(including special education) for children in China who have autism. Only private

programs exist. One such program is Beijing’s Xingxingyu Education Institute for

Children with Autism (Clark & Zhou, 2005). The first programs for autism began to

provide children with autism services in the early 1990s, including applied behavior

analysis (McCabe, 2008). Unfortunately, there have not been enough programs or

teachers to provide an education for all children with disabilities. Getting accurate data in

China is difficult given the size of the country (estimated to be 3.7 million square miles)

and its vast rural areas. One report in 2001 by the Xinhua News Agency estimated that

the number of children with autism was between 400,000 and 500,000. This rate is about

two or three times lower than what would be expected using prevalence estimates from

Western nations such as the United States. No nationwide epidemiological study has been

conducted as yet (Wong & Hui, 2008); however, two studies in provinces in East China

reveal quite discrepant results. Data collected in Changzhou indicate that 7 of 3,978

children have autism (Wang et al., 2002) whereas a study in the province of Anhui

showed that 420 of 3,559 children have autism, or 11.8% of the population (Ren & Duan,

2002).

8

Cross-Cultural Development of Tests

Several strategies have been proposed for the development of psychological tests to

be used in different cultures. There are three common strategies for developing

psychological measures to be applied in another culture: 1) to apply an already existing

instrument; 2) to adapt an existing instrument; or 3) to assemble a new instrument (Van

de Vijver & Leung, 1997).

Applying an already existing instrument In this approach, the instrument and its

translation are used without any modification. It is useful in situations when the

instrument covers all important aspects of a studied construct. To apply an existing

measure it has to be translated. The back translation method is probably the best known

method for instrument translation (Van de Vijver & Leung, 1997). It involves translating

items from original language to another by one researcher, translating the translated items

back into the original language by another researcher, and comparing the results. To

check the accuracy of the translation there are a number of techniques, including a study

design in which a group of bilinguals take the source and target versions of the test.

Different statistical techniques are also available to evaluate the equivalence of items of

the versions.

Adapting an already existing instrument If the existing instrument does not fully cover

the construct of interest, the instrument can be adapted by rephrasing, adding or replacing

items. For example, when Minnesota Multiphasic Personality Inventory (MMPI) was

tested in China some items were found to be meaningless in that cultural context and had

to be modified (Cheung, 1989). However, the majority of the items were kept the same

9

and it was possible to interpret the results in the light of the American norms (Van de

Vijver & Leung, 1997).

Assembling a new instrument This approach is used if the original instrument seems to be

absolutely inadequate for measuring the construct of interest. It is a rare strategy but, for

example, was used in creating personality inventories in some Eastern cultures (Van de

Vijver & Leung, 1997).

Influence of ICD-10 Development of the International Classification of Disorders (ICD-

10) published by the World Health Organization (1992) was an important step in the

development of a world wide consensus of disorders. The Diagnostic and Statistical

Manual of Mental Disorders (DSM-IV) published by the American Psychiatric

Association (1994) is structured in accordance with the ICD-10 structure (Andrews &

Slade, 1999). By beginning with this “agreed upon” standard of what constitutes the core

symptoms of specific physical and psychiatric disorders it is now possible (and easier) to

develop cross-cultural tests to assess psychiatric disorders, such as the CCMD-3 (Chinese

Classification of Mental Disorders).

Approach selected for this study The current study will utilize existing instruments that

are based upon specification of the primary symptoms of autism. These instruments are

going to be translated by competent bilinguals. Use of existing instruments has a number

of advantages including the possibility of maintaining the same score range and to

compare current research results with other studies. Another important advantage is the

lower cost of this strategy compared to the development and validation of a new or

adapted instrument (Van de Vijver & Leung, 1997). The development of the CCMD-3

(Chinese Classification of Mental Disorders) and DSM-IV also influenced this choice, as

10

well as an example of a similar instrument measuring autism (CARS - Childhood Autism

Rating Scale) that has been translated.

Concept of Test Development

This section will address the ideas of test development and relate them to the

development of cross-cultural tests. According to Brown (1976), test development

includes several steps: 1) specify the purpose of the test; 2) construct and present items;

3) assemble a final form of the test; 4) standardize it; and 5) carefully assess reliability

and validity of the new instrument.

In applying an already existing instrument for cross-cultural study, the first step

includes translation of it into the language of interest. The next step consists of giving the

original version of the instrument and the translation to a group of bilingual participants

and carefully comparing scores on them. If scores on the original version and the

translation are very similar, then a next step could be to field-test the new translated

instrument on a large group of participants in the country of interest. A next possible step

could be comparing the translated instrument to another existing instrument in the

country of interest. Further validation may include administration of the translated

instrument to contrasting groups of subjects; for example, to a group of clinically autistic

children and a control group of typically developing children.

The current study is the first step of the described above sequence in developing valid

and reliable rating scales of autism for use with Chinese speaking individuals. It will

include translation of existing valid and reliable American measures of autism into

Chinese, administering both original and translated versions of the instruments to a group

of bilingual participants, and comparing their scores on the versions.

11

Rating Scales Used In This Study

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale – Second

Edition (CARS2-QPC) The CARS2-QPC is one of three forms of the Childhood Autism

Rating Scale – Second Edition (CARS-2, published in 2010) which resulted from the

revision of the Childhood Autism Rating Scale (CARS). The first version of the CARS

was published in 1980 (Schopler et al., 1980). This measure was originally correlated

with the DSM-III and then with the DSM-III-R.

The CARS is a behavior rating scale intended to help diagnose autism. The CARS

was developed by Eric Schopler, Robert J. Reichier, and Barbara Rochen Renner. Initial

psychometrics for the CARS were determined using 537 children enrolled in the

University of North Carolina’s Treatment and Education of Autistic and related

Communication handicapped Children (TEACCH) program over a ten year period

(Schopler et al., 1980). It was designed to help differentiate children with autism from

those with other developmental delays, such as mental retardation. Development of the

CARS began in 1966 with the production of a scale that incorporated the criteria of Leo

Kanner (1943) and Creak (1964), and characteristic symptoms of childhood autism.

(Schopler et al., 1980)

The CARS evaluation criteria is comprised of a diagnostic assessment method that

rates children on a scale from one to four for various criteria, ranging from normal to

severe, and yields a composite score ranging from non-autistic to mildly autistic,

moderately autistic, or severely autistic. The scale is used to observe and subjectively rate

fifteen items: relationship to people, imitation, emotional response, body use, object use,

adaptation to change, visual response, listening response, taste-smell-touch response and

12

use, fear and nervousness, verbal communication, non-verbal communication, activity

level, level and consistency of intellectual response, and general impressions. This scale

can be completed by a clinician or teacher or parent, based on subjective observations of

the child's behavior. Each of the fifteen criteria listed above is rated with a score of: 1-

normal for child’s age, 2-mildly abnormal, 3-moderately abnormal, 4-severely abnormal,

Midpoint scores of 1.5, 2.5, and 3.5 are also used.

Total CARS scores range from a fifteen to sixty, with a minimum score of thirty

serving as the cutoff for a diagnosis of autism on the mild end of the autism spectrum.

Internal consistency of the CARS was high, with a coefficient alpha of .94 (Schopler et

al., 1988), indicating the degree to which all of the fifteen scale criteria scores constitute a

unitary phenomenon, rather than several individual behaviors. Inter-rater reliability was

established using two raters for 280 cases. The average reliability of .71 indicated good

overall agreement between raters. In addition, diagnoses based on parent interview and

direct observation agreed in 90% of the cases. The authors suggest that valid CARS

ratings and diagnoses can be achieved through parent interview. Thus, the CARS is a

good screening instrument for adolescents and adults.

The Childhood Autism Rating Scale-Parent version (CARS-P) is an alternative self-

report measure for assessing parents’ perceptions of their children’s level of functioning.

It is a direct adaptation of the CARS. The categories of the CARS-P (Bebko et al., 1987)

are the same as those of the CARS, with the exception of the deletion of one item,

general impressions. For each of the 14 domains (e.g., nonverbal communication, verbal

communication, relatedness with others,) severity is rated on a 4-point scale ranging from

1 (normal for chronological age) to 4 (severely abnormal for chronological age). In

13

addition, parents rate the stressfulness of each domain on a 4-point scale ranging from 1

(none at all) to 4 (extreme).

Utilizing a sample of 20 children ranging in age from 6 to 18 years (median=9 years,

no mean reported), Bebko et al. (1987) compared parent-reported CARS-P severity and

stress scores with scores given by professionals. There was agreement between mothers’

and fathers’ ratings, both of which were similar to professionals’ ratings. Parents of older

children gave lower (i.e., less severe) ratings than those of younger children. Also, those

families who reported the most stress on the CARS-P experienced more disruption in

their family during the subsequent year. Freeman et al. (1991) sought to further validate

the CARS-P with a sample of 25 children with autism or general PDD (age range of 3

years, 9 months to 20 years, 11 months, mean=10 years, 7 months). No difference was

found between parents’ CARS-P and professionals’ CARS ratings of severity. Also,

consistent with previous findings, there was strong agreement between mothers’ and

fathers’ severity ratings.

Like the original CARS, the Childhood Autism Rating Scale – Second Edition

(CARS-2) is an older, more traditional autism spectrum characteristic checklist. This

measure may assess individuals with more classic autism symptoms, as well as being

more responsive to individuals on the "high functioning" end of the Autism Spectrum—

those with average or higher IQ scores, better verbal skills, and more subtle social and

behavioral deficits (Bourgondien et al., 2010). While retaining the simplicity, brevity and

clarity of the original test, the CARS2 adds forms and features that help integrate

diagnostic information, determine functional capabilities, provide feedback to parents and

design targeted intervention. The CARS2 includes three forms: 1.) Standard Version

14

(CARS2-ST) Rating Booklet --- equivalent to the original CARS use with individuals

younger than 6 years of age and those with communication difficulties or below-average

estimated IQs; 2.) High Functioning Individuals (CARS2-HF) Rating Booklet --- an

alternative for assessing verbally fluent individuals, 6 years of age and older, with IQ

scores above 80; and 3.) Questionnaire for Parents or Caregivers (CARS2-QPC) --- an

unscored scale that gathers information for use in making CARS2-ST and CARS2-HF

ratings (Bourgondien et al., 2010). The CARS2-QPC is an unscored form completed by

the parent or caregiver of the individual being assessed. It has five levels scales: not a

problem, mild-to-moderate problem, severe problem, not a problem now but was in the

past, and don’t know. The scale is used to observe and subjectively rate 36 items in six

sections: communication, relationship to others and emotional response, body movement,

playing, reaction to new, and senses using. The areas covered by the CARS2-QPC

include the individual’s early development; social, emotional and communication skills;

repetitive behaviors; play and routines; and unusual sensory interests (Bourgondien et al.,

2010). Its purpose is to give the clinician more information on which to base CARS2-ST

or CARS2-HF ratings. Often the questionnaire serves as the framework for a follow-up

interview, during which the clinician can clarify and interpret the responses provided by

the parent or caregiver.

Reliability and validity information is not currently available for the CARS2-QPC

because the authors intended this measure primarily as an informal source of information

to be used by professionals who would then complete the Childhood Autism Rating Scale

Standard Version (CARS2-ST). For the purposes of examination in the current study,

responses on the CARS2-QPC were given numerical value. Reliability and validity have

15

been shown to be good for the CARS2-ST, including reports of an internal reliability

coefficient of .93 and moderate to strong correlations with other autism-related screening

devices as indications of validity (Vaughan, 2011).

Gilliam Autism Rating Scale–Second Edition (GARS-2) The GARS-2, published in 2010

is developed from the first version of the Gilliam Autism Rating Scale (GARS) published

in 1995. The norms of the GARS were obtained using data collected from 1,092 children,

adolescents, and young adults from the United States and Canada and this instrument is

in wide use. It should be noted that since the release of the original GARS, several

studies have challenged its normative sample and claimed that the test scores resulted in

too many false negatives (Bourgondien et al., 2010). The first version of the GARS

contains four subscales used to produce a total autism quotient: Stereotyped Behaviors,

Communication, Social Interaction, and Developmental Disturbances. Although

significant correlations exist between the three subscales that evaluate current behavior,

the Developmental Disturbances subscale was not significantly correlated with any other

subscale in the GARS (South et al., 2002). Consequently, the Developmental

Disturbances subscale was dropped from the Autism Index in the latest version but has

subsequently been revised and now appears in the GARS-2 in the form of a parental

interview. In addition, the GARS-2 offers a number of improvements over the original

edition. The manual clarifies test items on each subscale (Stereotyped Behaviors,

Communication, Social Interaction) by providing detailed behavioral descriptors which

decrease the potential false-negative autism diagnoses (Montgomery et al., 2008). Aside

from being relatively simple and quick to complete, the GARS-2 has the added advantage

of a flexible format. Parents need not be the sole raters; ratings can be provided by

16

anyone who knows the individual well. Furthermore, the instrument can be completed in

the absence of the examiner.

The Gilliam Autism Rating Scale–Second Edition (GARS-2) is a screening tool for

autism spectrum disorders for individuals between the ages of 3 and 22. Its purpose is to

help professionals screen patients/clients for Autism Spectrum Disorders, but in a school

setting, it may also be used to help educational teams determine whether a child may

meet state educational criteria for receiving special education services under the Autism

Spectrum Disorder category (Montgomery et al., 2008). This scale is divided into nine

sections includes three key components: subscale and composite scores, a parent

interview, and key questions to enable diagnostic accuracy. The three subscales of the

GARS-2 contain 42 Likert-type items measure a series of negative behaviors reflecting

the three primary areas (Stereotyped Behaviors, Communication, and Social Interaction)

of the DSM-IV-TR criteria for the diagnosis of autism. In addition, an Autism Index

provides a composite indication of autism severity. Respondents are required to choose

from one of the four possible choices provided for each of 42 Likert-type items, ranging

from 0 (never observed) to 3 (frequently observed). The last two sections of the GARS-2

are completed via an interview with a parent or caregiver who has had sustained contact

with the individual. In the first part of the interview, the respondent is asked to answer

yes or no to a series of questions pertaining to the child’s development in his or her first 3

years. In the final section of the GARS-2, the respondent is prompted to answer a series

of open-ended questions regarding medical history, behavior, symptoms of autism

spectrum disorders, and parental concerns. The GARS-2 uses a standardized score

referred to as the Autism Index. It has a mean of 100 and a standard deviation of 15.

17

Scores of 85 or higher on the Autism Index indicate that an individual is likely to have

autism. Scores of 70 to 84 indicate that an individual may have autism, and any score of

69 or less suggests that it is unlikely that the individual has autism.

The GARS-2 has a good reliability and validity and is considered sufficient as a

specific screening measure to contribute to the diagnosis of autism (Montgomery et al.,

2008). The GARS-2 shows good internal consistency for the three subscales and the total

scale with coefficient alphas ranging from .84-.94. The validity of the GARS-2 was

demonstrated through several studies. These studies confirm that (a) the items of the

subscales are representative of the characteristics of autism; (b) the scores are strongly

related to each other and to performance on other tests that screen for autism, and the

GARS-2 can discriminate persons with autism from other individuals with severe

behavioral disorders; (c) the scores are not related to age; and (d) persons with varying

diagnoses will score differentially on the GARS-2 (Kurt & Geisinger, 2007).

Rating Scales Used In China

In China, there is only a limited amount of research literature on applications of

different autism measures since the first report of autism by Dr. Tao. In Chinese clinical

application and research, the CCMD-3 (Chinese Classification of Mental Disorders) (Jing

& Xiao-Ling et al., 2006) and DSM-IV (Diagnostic and Statistical Manual of Mental

Disorders) (Jing & Xiao-Ling et al., 2006) are widely used for evaluating and recording a

diagnosis of autism. In addition, the ABC (Autism Behavior Checklist) (Yang et al.,

1993), CABS (Children’s Autism Behavior Scale) (James Song. & Fang et al., 2009),

WABS (Waterville Autistic Behavior Scales) (James Song & Fang et al., 2009), and M-

Chat (Modified Checklist for Autism in Toddlers) (James Song & Fang et al., 2009) have

18

been applied for autism screening. The CARS (Childhood Autism Rating Scale) ( Jing &

Yufeng et al., 2004) and MMPI (Minnesota Multiphasic Personality Inventory)(Cheung

& Song et al., 1989) have also been reported in the literature as assistive in making an

autism spectrum diagnosis (James Song & Fang et al., 2009) . The PEP-R

(Psychoeducational Profile Revised) (Sun & Wei et al., 2000) for educational training

and assessment of young children with autism has also been translated and adapted in

China. The first author of this thesis practiced as a psychiatrist in China. The Autism

Behavior Checklist (ABC) and Childhood Autism Rating Scale (CARS) are the main

autism rating scales used in the mental hospital in which she worked.

Research Questions, Expectations, and Hypothesis of the Investigation

The purpose of this study was to take a first step in the process of developing a valid

and reliable parent report scale of autism spectrum characteristics in Chinese. This

project entailed translating two already existing valid and reliable American measures of

autism, The Childhood Autism Rating Scale – Second Edition Questionnaire for Parents

or Caregivers (CARS2-QPC) and The Gilliam Autism Rating Scale-2 (GARS-2), into

Chinese and then giving the instruments in both English and Chinese languages to a

group of bilingual Chinese immigrants/students who are parents of typically developing

children. Then, their scores on the English and Chinese versions of the scales were

compared. This was a preliminary validation assessment to determine the two new

instruments’ utility with Chinese speaking populations. The question examined in the

current study is the degree to which Chinese versions of CARS2-QPC and GARS-2

accurately measure parent endorsement of questions about their child’s behavior. The

question this line of research eventually hopes to answer is how accurately the Chinese

19

versions of these instruments will measure endorsed autism spectrum symptoms by

parents who are rating their children with autism. In order to answer the current question,

scores on the CARS2-QPC and its Chinese version were correlated and, similarly, scores

on GARS-2 and its Chinese version were correlated. The following were expectations

and hypotheses for the current study:

Expectation: Given the similarity of content using almost literal translation, it is

expected that Chinese versions and CARS2-QPC and GARS-2 will highly correlate.

Hypothesis 1: It is hypothesized that scores on the Chinese CARS2-QPC will

significantly and positively correlate with scores on the CARS2-QPC.

Hypothesis 2: It is hypothesized that scores on the Chinese GARS-2 will significantly

and positively correlate with scores on the GARS-2.

20

CHAPTER II

METHODS

Participants

Participants consisted of 20 bilingual Chinese-English speaking parents among

students and researchers of the University of Kentucky, and among other Chinese

immigrants living in Kentucky. A convenience sampling method was employed.

Participants were parents of at least one neurotypically developing child ages 2 years

through 17 years. The participants in the current study were voluntary. The investigator

asked volunteers to participate in the study and promised to send a summary of the results

after the study was completed.

Materials

The participants in the current study were asked to complete Chinese and English

versions of both the CARS2-QPC and the GARS-2. The CARS2-QPC and the GARS-2 are

the most widely used standardized instruments specifically designed to aid in the

diagnosis of autism for use with children as young as 2 years of age.

Back-translation was used as part of the process of developing the Chinese version of

these instruments (Asiamarketresearch, n.d.). The English versions were translated into

Chinese by one bilingual speaker fluent in both languages with the help of three other

bilingual speakers. The translation kept the format, response scale, and instructions of original

measures. After they were translated into Chinese by two bilingual speakers, the other two

bilingual speakers who did not participate in the original translation converted the

Chinese language scales back into English language scales. All of these three bilingual

speakers have doctoral (Ph.D.) degrees and work at a state university as physiology

21

research scientists. One bilingual speaker who assisted the author in translating the

original English versions into Chinese versions is a Chinese 38 year-old male who has

lived in the USA for 7 years. For the other two bilingual speakers, one is a Chinese 59

year-old female who received her doctoral degree in England. She lived in England for 5

years and then came to USA 15 years ago. Another one is a 33 year-old male who

obtained his master’s degree and doctoral degree in the USA. All of them are fluent in

both Chinese and English. Then, five native English speakers evaluated both the original

English version and the back-translated English version. The average age of these five

raters is approximately 30 years-old and they are all European-American. Three of them

are graduate students at a state university; one is working at a state university as a graphic

artist with bachelor’s degree, another one is working at a regional university as an

administrative assistant with an associate’s degree. These evaluations were completed on

a 5-point scale (1 = extremely different, 5 = extremely similar). The similarity of the

original English version and the back-translated English version was determined by the

five native English speakers. There were 62 items on CARS and the 134 items on the

GARS needed to be rated by these five native English speakers. Then researcher

conducted a mean score for each item to determine consistency. There were only six

items that were scored no more than 3 (uncertain). These six items were revised to more

accurately reflect the intent of the original English version and let five native English speakers

evaluated them again. To enhance the validity of the results, an independent set of five raters

were asked to rate the similarity between the revised items and the original English items. Two

of the five raters are research scientists working at a state university and the other three are

graduate students at a regional university. Finally, the Chinese versions were confirmed.

22

This practice is consistent with the practice used in the development of a variety of cross-

cultural measures of psychological constructs (Van de Vijver & Leung, 1997).

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale – Second

Edition (CARS2-QPC) The CARS2-QPC is one of three forms included in the Childhood

Autism Rating Scale – Second Edition (CARS-2, published in 2010) which is a behavior

rating scale intended to help diagnose autism. The other two forms of CARS-2 are

Standard Version (CARS2-ST) Rating Booklet and High Functioning Individuals

(CARS2-HF) Rating Booklet. The CARS2-QPC is an unscored scale that gathers

information from the parent or caregiver of the individual being assessed for use in giving

the clinician more information on which to base CARS2-ST or CARS2-HF ratings

(Bourgondien et al., 2010). There are five level scales (“not a problem”, “mild-to-

moderate problem”, “severe problem”, “not a problem now but was in the past”, and

“don’t know”) in the measure to observe and subjectively rate 36 items in six sections:

communication, relationship to others and emotional response, body movement, playing,

reaction to new, and senses using. These six sections cover the individual’s early

development; social, emotional and communication skills; repetitive behaviors; play and

routines; and unusual sensory interests (Bourgondien et al., 2010).

Gilliam Autism Rating Scale–Second Edition (GARS-2) The GARS-2, published in

2010, a revision of the popular Gilliam Autism Rating Scale, assists teachers, parents,

and clinicians in identifying and diagnosing autism in individuals ages 3 through 22

years. It also helps estimate the severity of the child's disorder. Items on the GARS-2 are

based on the definitions of autism adopted by the Autism Society of America and the

Diagnostic and Statistical Manual of Mental Disorders: Fourth Edition-Text Revision

23

(DSM-IV-TR) (Montgomery et al., 2008). The instrument consists of 42 Likert-type

items, ranging from 0 (never observed) to 3 (frequently observed), describing the

characteristic behaviors of persons with autism. The items are grouped into three

subscales (Stereotyped Behaviors, Communication, and Social Interaction). The GARS-2

also includes a parent interview and questions to consider during diagnostic decision-

making. The GARS-2 uses a standardized score referred to as the Autism Index which

has a mean of 100 and a standard deviation of 15. Scores of 85 or higher on the Autism

Index indicate that an individual is likely to have autism. Scores of 70 to 84 indicate that

an individual may have autism, and any score of 69 or less suggests that it is unlikely that

the individual has autism.

Procedure

The examiner administered the English and Chinese versions of both the CARS2-

QPC and the GARS-2 to each participant individually. Initially, the examiner briefly explained

the procedures of the study and the confidentiality of the participant’s response. After the

participant signed his/her informed consent form (Appendix A) he/she was asked to complete a

brief demographic questionnaire (Appendix B). Then the packet consisting of the four

measures (English CARS2-QPC and GARS-2, and Chinese CARS2-QPC and GARS-2) and

instructions for the participant were handed to him/her. Each participant completed the Chinese

and English versions of both the CARS2-QPC and the GARS-2. The order of the presentation

was varied in order to randomize order effects. When participants asked questions about the

scales, the discourse remained in Chinese when the Chinese-language measure was being

taken. The discourse was conducted in English when the English-language measure was being

taken. Participants were allowed to use an electronic translator if this is a tool that they

24

regularly use in daily life. Participant questions about the clinical content of the scale were

answered, but not specific questions about the meanings of words or other linguistic-related

queries. All questions were recorded for later analysis.

The average time used to complete the battery of measures was about 50 minutes. This

varied depending on the participant’s familiarity with English, need to spend time with an

electronic translator, etc. After the questionnaires had been scored, if any of the participants

score fell into the range associated with the autism spectrum, the families were contacted and

informed of developmental and educational resources available in the community.

25

CHAPTER III

RESULTS

The purpose of this study was to make a first step in developing valid and reliable

measures of autism in Chinese. This study involved translating two American measures

of autism, The Childhood Autism Rating Scale – Second Edition Questionnaire for

Parents or Caregivers (CARS2-QPC) and The Gilliam Autism Rating Scale-2 (GARS-2),

into Mandarin Chinese. After the Chinese versions were confirmed through back-

translation, these four instruments (the English CARS2-QPC, the Chinese CARS2-QPC,

the English GARS-2, and the Chinese GARS-2) were then administered to a group of

bilingual Chinese immigrants, many of whom were graduate students or researchers at a

Midwestern university or spouses of these researchers. The individuals’ scores on each

version of the instrument were determined. These scores were then compared by way of

correlational analysis to see if they demonstrated a high correlation between the English

version and the Chinese version of each of the scales.

The rationale underlying this step was that if the Chinese versions of the CARS2-QPC and

GARS-2 correlated highly with the English versions, then they were inferred to be two

instruments were measuring the same construct. Further, this would provide some

preliminary (tentative) support for the Chinese versions of the CARS2-QPC and GARS-

2. The characteristics of participants, linguistic analysis, and the results of the

correlational analyses are reported in this chapter.

Characteristic of Participants

A total of 20 bilingual Chinese immigrants currently residing in Kentucky were recruited

to participate in this study. Because these two rating scales must be completed by parents

26

or caregivers all of these participants were parents of at least one neurotypically

developing child ages 2 years through 17 years. The participants consisted of 4 (20%)

males and 16 (80%) females. Their reported occupations mainly consisted of homemaker

(30%), researcher (25%), and student (20%). About 75% of the participants were

attending or had completed graduate school. About 20% of participants had graduated

from college, and about 5% had some college education. The ages of the participants

ranged from 26 to 41, with a mean of 35.30 (SD = 3.84). The length of stay in the United

States ranged from 2 to 15 years, with an average of 7.13 years (SD = 3.58).Their

children consisted of 15 (75%) boys and 5 (25%) girls; the ages of their children ranged

from 2 to 9 years, with a mean of 4.63 years (SD = 2.22).

Similarity of Original and Back-translated versions

Five native English speakers compared the original English version and the English-to

Chinese-to-English back-translated version of each scale using a 5-point scale (1 =

extremely different, 5 = extremely similar). Of the 62 items on CARS and the 134 items

on the GARS, only 6 items had a mean score of 3.00 or lower as determined by the five

raters. The intraclass correlation coefficient across the 5 raters for each item on these two

measures is .94, p<.001, suggesting there is high reliability between the raters. These 6

items were again examined and re-translated. When the five original raters re-examined

these revised six items, they were all found to have a mean rating of 4.8 on the similarity

scale. Then an independent set of five raters (as described above) rated these six revised

items again and had a mean rating of 4.7 on the similarity scale. Thus, we conclude that

the original English version and the translated Chinese version are very similar.

27

Correlational Analysis

The main purpose of this study was to start the validation process of Mandarin Chinese

versions of two autism rating scales. This was accomplished by administering both the

CARS2-QPC and the GARS-2 and their Chinese translations to a group of bilingual

respondents and correlating the scores on the American and Chinese versions of the each

instrument. The scores were correlated using Pearson's product moment correlation,

which examined the relationships between the CARS2-QPC and its Chinese translation

and the GARS-2 and its Chinese translation.

Descriptive statistics The Childhood Autism Rating Scale 2-Questionnaire for Parents

and Caregivers (CARS2-QPC) is designed to provide clinicians with qualitative

information from a parent perspective. As used clinically, it does not have a numerical

scoring system. For the purposes of the current analyses, however, the researcher

assigned as 5-point Likert-type scale response options the numbers 1 through 5, with 1

indicating “not a problem”, 2 indicating “mild to moderate problem”, 3 indicating “severe

problem”, 4 indicating “not a problem now, but was in the past”, and 5 indicating “don’t

know”. Using this numerical system, the mean score on the English CARS2-QPC was

1.18 and the standard deviation was 0.27. The mean score on the Chinese CARS2-QPC

was 1.18 and the standard deviation was 0.27. Means for both versions fell at the "not a

problem" range. The mean scores and standard deviations for both Chinese and English

CARS2-QPC are presented in the Table 1.

The GARS-2 provides both raw and standardized scores. Raw scores were chosen for use

in the correlational analysis section of this research. Both raw and standard scores will be

presented here, so that interpretation of the standard scores can demonstrate whether this

28

population was reporting standard scores in the “Very likely”, “Possibly”, or “unlikely”

to have autism range. Mean raw scores for the English version were as follows for the 3

subscales of the GARS-2: Stereotyped Behaviors (M = 4.75; SD = 3.86 ),

Communication (M = 3.70 ; SD = 3.47 ), and Social Interaction (M = 3.30 ; SD = 3.44 );

Mean raw scores for the Chinese version were as follows for the 3 subscales of the

GARS-2: Stereotyped Behaviors (M = 4.75; SD = 3.86 ), Communication (M = 3.65 ; SD

= 3.45 ), and Social Interaction (M = 3.25 ; SD = 3.42 ). The average Autism Index

(standard score with M = 100; SD = 15) was the same (M = 57.6; SD = 9.90) for the

Chinese version and the English version. Both of these average Autism Index scores fall

at the “unlikely” to have autism range. The mean and the standard deviation for each

instrument are listed in the Table 1.

TABLE 1

MEAN SCORES AND STANDARD DEVIATIONS OF THE ENGLISH CARS2-QPC,

THE CHINESE CARS2-QPC, THE ENGLISH GARS-2, AND THE CHINESE GARS-2

(N=20)

Variable Mean Standard Deviation

English CARS2-QPC 1.18 0.27

Chinese CARS2-QPC 1.18 0.27

Stereotyped Behaviors 4.75 3.86

Communication 3.70 3.47

Social Interaction 3.30 3.44

English GARS-

2

Autism Index 57.6 9.90

29

TABLE 1 (continued)

Variable Mean Standard Deviation

Stereotyped Behaviors 4.75 3.86

Communication 3.65 3.45

Social Interaction 3.25 3.42

Chinese GARS-

2

Autism Index 57.6 9.90

Correlational analysis The analysis was conducted on the assigned scores on the English

and Chinese CARS2-QPC and raw scores on the English and Chinese GARS-2. In

general, the analyses found that the English CARS2-QPC was significantly correlated

with the Chinese CARS2-QPC, and the English GARS-2 was significantly correlated

with the Chinese GARS-2. The distributions of the correlations coefficients are shown in

Figure 1 and Figure 2. Most of the correlations are 1.00, meaning that the English and

Chinese versions were identical, and the few correlations that are not 1.00 are statistically

significant and very high.

30

FIGURE 1

DISTRIBUTION OF THE CORRELATIONS COEFFICIENTS OF THE ENGLISH

AND THE CHINESE CARS2-QPC ITEMS

31

FIGURE 2

DISTRIBUTION OF THE CORRELATIONS COEFFICIENTS OF THE ENGLISH

AND THE CHINESE GARS-2 ITEMS

The GARS-2 reports subscales of stereotyped behavior, communication, social

interaction, and an autism index. The correlations between the English and Chinese

versions of the GARS-2 for these subscales were computed. The correlations are

1.00, .998, .998, and 1.00, all p < .001. These very high correlations indicate that both

the English and Chinese versions of the GARS-2 are very similar. The correlation

coefficients are listed in Table 2.

32

TABLE 2

INTERCORRELATIONS BETWEEN THE ENGLISH AND THE CHINESE

GARS-2 AUTISM INDEX AND THREE SUBSCALES

(N=20)

Chinese GARS-2

Stereotyped

Behaviors

Communication Social

Interaction

Autism

Index

Stereotyped

Behaviors

1.00* --- --- ---

Communication --- .998* --- ---

Social

Interaction

--- --- .998* ---

English

GARS-2

Autism Index --- --- --- 1.00*

* Correlations are significant at the. 01 level (2 tailed)

The results of the study support the hypotheses that scores on the Chinese CARS2-

QPC would significantly and positively correlate with scores on the English CARS2-

QPC and that scores on the Chinese GARS-2 would significantly and positively correlate

with scores on the English GARS-2. That is, high scores on the English version of these

two autism rating scales go with high scores on the Chinese versions of these two scales,

and low scores on the English scales go with low scores on the Chinese scales. These

strong correlations are thought to be caused by structural similarities between the

33

instruments and their translations due to utilization of literal translation, same format, and

same response scale.

Reliability Analysis

In addition to completing correlations between the scores on the CARS2-QPC, GARS-2

and their translations, the internal consistency of the Chinese CARS2-QPC and the

Chinese GARS-2 were calculated using coefficient alpha (Brown, 1976). The coefficient

alpha for the overall score of the Chinese CARS2-QPC was .91, for the overall score of

the Chinese GARS-2 was .89, and for the score of each of the 3 subscales of the GARS-2

was .70, .71, and .77, suggesting good internal consistency (coefficient alpha) for these

measures in this non-clinical population.

34

CHAPTER IV

DISCUSSION

This thesis was conducted as an initial step in developing valid and reliable versions

of the CARS2-QPC and the GARS-2 to be used by Chinese parents in United States and

China. The study was accomplished by translating two questionnaires for autism scale

rating (CARS2-QPC and GARS-2) into Mandarin Chinese and correlating the scores

from the original surveys and the Chinese versions. There is a limited amount of research

literature on applications of different autism measures in China. This study was designed

to introduce Chinese versions of autism rating scales for the Chinese population in

America and China, and to contribute to the current literature. This section of this paper

will discuss the findings and conclusions in this study as well as provide an overview of

current study limitations and perspectives for future research.

Discussion of Participants

The result analysis demonstrated that all of the individual mean scores of the participants

fall into “Not a Problem” category except one on both English CARS2-QPC and Chinese

CARS2-QPC. The ratings range from "unlikely" to "possibly" (only two fall into

“possibly”) on the English GARS-2 and Chinese GARS-2 scoring scales. The extended

range of scores is important in correlational analyses because it prevents attenuated

correlation coefficients due to the lack of variability (Diekhoff, 1992). More confidence

can be placed in the results of this study because of the wide range of obtained scores.

The scores of each individual on English CARS2-QPC and Chinese CARS2-QPC

range from 1.00 to 2.00 (only one scored a 2). The mean scores of the participants on

both versions are the same (1.18). This score falls into the "not a problem" category. The

35

Autism Index (standard score with M = 100; SD = 15) of each individual ranges from 41

to 74 (two scores of 74). The average Autism Index of the participants is 57.6 with a

standard deviation 9.9 for both the English GARS-2 and Chinese GARS-2, which falls in

the "unlikely" category.

It is important to discuss the range of scores from the participants. First, scores on both

English versions and Chinese Versions are very low and no one scored at the range of

“Severe Problem” or “Very Likely”. There are two reasons for the low scores shown in

this study. One is the relatively low rate of autism incidence, with approximately 1 out of

110 U.S. children diagnosed as ASD in 2011(CDC, 2011). Due to the small sample size

in this study it is reasonable that none of the participants falls into the “Severe Problem”

or “Very Likely” ranges. Another reason may be Chinese parents’ attitude to their

children’s weaknesses or disabilities. Fong and Hung (2002) compared attitudes toward

disabilities across cultures and found that attitudes toward children’s disabilities in

mainland China are far more negative than in other countries or regions. Their study also

demonstrated that family members in Hong Kong as well as in mainland China are often

unwilling to admit having a family member with disabilities due to shame or fear of

discrimination. For above reasons it is very likely that Chinese parents may underreport

their children’s problems.

The second point to be noted is that there are two individual’s scores on GARS-2 in

the “possibly” range but only one participant’s score on CARS2-QPC falls into the

“mild-to-moderate problem” range. Also, the single participant scoring at “mild-moderate

problem” from CARS2-QPC does not overlap with the two individuals having “possibly”

scores from GARS-2. The possible reason is that the scoring criteria for these two

36

screening scales are different. The rating instructions of GARS-2 are very clear which

help raters to decide which score they would choose. For example, “1” means seldom

observed--- individual behaves in this manner 1-2 times per 6-hour period. In the

CARS2-QPC there is not any instruction or introduction to guide raters how to rate. Most

of the questions participants in this study asked were about the CARS2-QPC. For

example, item 6 in section 1 of the CARS2-QPC reads as follows: Uses made-up words

or repeats specific words or phrases --- not a problem (does very well); mild-to-moderate

problem (sometimes a problem); severe problem (often or always a problem); not a

problem but was in the past. Many participants were confused about whether “not a

problem (does very well)” means child uses made-up words or repeats specific words or

phrases very well or whether the child doesn’t engage in those behaviors. Also, many

participants didn’t know what the criterion was for “does very well”, “sometimes”, and

“often”. As discussed above, Chinese parents, related to Chinese culture, may not want

to admit to their children having a problem, so most of them chose “not a problem”. This

is an additional possible explanation for why the mean scores of the sample on the two

versions was only 1.18.

Discussion of the Correlation Analysis

When examining the correlational data obtained, it appears that the Chinese CARS2-QPC

correlates significantly and positively with the English CARS2-QPC and the Chinese

GARS-2 correlates significantly and positively with the English GARS-2. This suggests

that the scores on the Chinese CARS2-QPC and English CARS2-QPC co-vary, as well as

the scores on the Chinese GARS-2 and English GARS-2. The average scores on Chinese

versions correspond to the average scores on English versions, and the higher scores also

37

coincide respectively. The strong correlation coefficients found between the English

CARS2-QPC and Chinese CARS2-QPC, as well as English GARS-2 and Chinese

GARS-2 suggest that these pairs of instruments are measuring the same thing. These

findings support the hypotheses and provide evidence for the validity of the Chinese

CARS2-QPC and the Chinese GARS-2.

Discussion of the Coefficient Alpha

The results of this study indicate that both the Chinese CARS2-QPC and GARS-2 have

high internal consistency as measured by Cronbach’s coefficient alpha (Anastasi, 1982).

This coefficient is calculated on the average inter-item correlations. The specific

coefficient alpha for Chinese CARS2-QPC was .91 and the specific coefficient alpha for

Chinese GARS-2 was .86. High internal consistency means that all items of an

instrument measure the same construct. This is the case with the Chinese CARS2-QPC

and the Chinese GARS-2.

Limitations and Perspective for Future Research

The current study provides initial support for the Chinese versions of the CARS2-QPC and

GARS-2. There are several limitations of the study, however, that need to be addressed.

These limitations are: small sample size, utilization of non-clinical participants, restricted

educational range of the participants, and limited age range of the participants.

Suggestions for future research will be discussed after the review of limitations of this

study.

Limitations The first limitation of the study is the small sample size. This study used a

sample consisting of 20 participants. A larger sample size is desirable to increase the

confidence in and generalizability of the results. For example, Chlebowski et al. (2010)

38

used 606 children as a normative sample to investigate the children autism rating scale

(CARS) as a tool for ASD diagnoses.

The second limitation of this study involved utilization of a non-clinical sample.

Clearly, inclusion of a clinical sample would increase confidence and generalizability of

the results. A clinical population consisting of individuals seeking mental health services

or evaluations for their children suspected of having autism spectrum disorders would

make the sample more representative of individuals for which the CARS2-QPC, GARS-

2, and their Chinese translations were designed. For example, a Spanish translation of

Autism Detection in Early Childhood (ADEC-SP) was applied to both clinical and non-

clinical children (Hedley & Young, et al., 2010). Therefore, the use of clinical sample

and populations are suggested for future research on the Chinese CARS2-QPC and

GARS-2.

The third limitation of the current study is the restricted educational range of the

sample. The current sample primarily involved researchers, graduate students, and their

spouses living in Central Kentucky. About 75% of the participants are attending or

completed graduate school. Whereas, in the general population the percent of people with

graduate education is significantly smaller than in the present sample. In 2010, 30 percent

of adults 25 and older had at least a bachelor's degree, only 11 percent of adults 25 and

older had an advanced degree in United States (U.S. Census Bureau, 2011). In addition,

Chinese living in Central Kentucky may not be representative of the general Chinese

American population. One way to select a more representative sample in the future study

would be to get a survey of Chinese living in the US and randomly select participants for

39

the research sample. However, this type of research organization is expensive and

difficult to accomplish without the collaborative effort of a group of researchers.

The last limitation of the study involved the narrow age range of the participants. The

ages of the children in the present study ranged from 2 to 9 years, with a mean of only

4.63 years. As mentioned earlier, the present study planed to recruit children aged 2 to 17

years old. Therefore, the generalizability of the results for a wider age range is limited.

Future studies need to include respondents from a variety of age groups, ranging from 2

to 17 years.

Suggestions for Future Study The proposals for future study are based on the limitations

of the current study as follows: (1) increase the sample size; (2) include a clinical

population; (3) increase demographic diversity of the sample; and (4) continue validating

research on the Chinese CARS2-QPC and GARS-2.

The generalizability and confidence in the results will increase with enlarging the

sample size, including a substantial clinical sample, and using a demographically diverse

population in terms of age, education, and other characteristics.

Overall, the current research was intended to be a first step in a larger program of

research to develop valid and reliable measures of autism for Chinese-speaking

individuals. Future study should also focus on other psychometric properties of the

Chinese CARS2-QPC and GARS-2, for example, on concurrent, discriminant, and

convergent validity. Additional study is needed on the reliability of these instruments. In

that light, the next step in this line of research might be administering the Chinese

CARS2-QPC and GARS-2 to a larger sample of Chinese participants. Another aspect for

future study will include applying the measures to contrasting groups, to a clinical sample

40

and non-clinical control sample, to see whether the Chinese CARS2-QPC and GARS-2

would discriminate between the groups. Future research could also involve comparing

the Chinese CARS2-QPC and GARS-2 to other instruments in China that are currently

used to assess characteristics of autism.

Strengths of the present study The discussion of the limitations of the present study is

important and useful for planning future research. The present study does, however, have

two clear strengths. First of all, the present study has high clinical value. Mandarin

Chinese is the primary language spoken at home for most of Chinese families which live

in USA. Because of the language barrier, many Chinese parents don’t understand

questions on English rating scales, especially some medical terms. Whereas most of the

physicians, nurses and social workers working with children in the United State don’t

speak Chinese. There is a dearth of professionals to explain these questions to Chinese-

American parents. This language problem could have an enormous influence in the

assessment and diagnosis of autism within Chinese American families. The present study

will help Chinese parents who live in the USA to rate their children being evaluated for

autism spectrum disorders on the CARS2-QPC and GARS-2 with increased accuracy.

Thus their reports can more accurately guide professionals’ diagnoses. Second, with

China’s large population and increasing middle class, there will be increasing interest in

obtaining diagnoses for children with developmental difficulties and hopefully, gradual

increases in the support and educational services available for these children. As services

increase, educational and government systems will begin to develop screening and gate

keeping mechanisms to decide which individuals will be eligible for services. Screening

and diagnostic measures for autism spectrum disorders in China will continue be in

41

demand. With the increase in Chinese population and special educational services, valid

and reliable autism measures in Chinese will be required. The present study has

established a first step in developing empirically valid and reliable autism measures in

Chinese. Although the present instruments have not been finalized, the current versions

are a sound beginning for the development of empirically valid and reliable Chinese

language autism screening instruments for research and practice.

42

CHAPTER V

SUMMARY

The focus of this study was to begin the validation process of developing two autism

measures to be used in Chinese-speaking population living in America or China. This

study used two existing valid and reliable American measures of autism – the

Questionnaire for Parents or Caregivers of Childhood Autism Rating Scale – Second

Edition (CARS2-QPC) and the Gilliam Autism Rating Scale–Second Edition (GARS-2).

These instruments were translated into Mandarin Chinese and back-translation was used

to support the accuracy of translation. The concurrent validity of the Chinese translations

of CARS2-QPC and GARS-2 was determined by comparing scores from a sample of

Chinese and English speaking bilinguals. The results indicate that the Chinese

translations of CARS2-QPC and GARS-2 do measure what they were intended to

evaluate. The results of assessment of internal consistency indicate that the Chinese

CARS2-QPC and GARS-2 have a good internal consistency. The results of this study

contribute to the literature on valid and reliable measures of autism in Chinese.

This study has a number of limitations, which will be kept into consideration when

conducting future study. They include: (1) small sample size; (2) utilization of non-

clinical sample; (3) restricted educational range of the sample; and 4) limited age range of

participants.

Additional aspects of future study on the Chinese CARS2-QPC and GARS-2 are

proposed. The main recommendation is to continue validation research of the Chinese

CARS2-QPC and the Chinese GARS-2, using larger and more diverse samples and

including participants with clinically significant characteristics of autism.

43

Finally, it is important to remember that this study was developed as a first step in a

bigger research project and a future line of research to develop valid and reliable Chinese

language assessment tools for the autism spectrum.

In summary, the statistical analyses of this study indicate that the Chinese versions of

CARS2-QPC and GARS-2 are valid instruments for measuring characteristics of autism

spectrum disorders. Continued research on the psychometric properties of these

instruments is of critical importance. However, the current study suggests that these

instruments are appropriate for beginning use in clinical and research settings. In

addition, since CARS2-QPC and GARS-2 have not yet been used in China, this study

begins a data pool on the Chinese CARS2-QPC and GARS-2.

44

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51

APPENDIX A

Informed Consent Form

52

Informed Consent Form

Project Number ______________ Researchers: Nannan Li

Myra Beth Bundy, Ph.D.

Eastern Kentucky University

As a graduate student in general psychology at Eastern Kentucky University, I am

conducting research study for my Master’s degree project. I appreciate your participation

in this study. Your involvement in this project is strictly voluntary and you will be free to

refuse or stop at any time without penalty. Your responses to questions will be held

strictly confidential, and your name will not appear on any of the questionnaires.

Your participation in this study will require approximately 60 minutes of your

time and will require you to complete two Chinese and two English questionnaires about

your child’s behavior. After you complete the session, you will be given an explanation

of this study.

If you wish to participate in this study and all of your questions have been

answered, please sign below.

Printed Name: _________________________________

Signature: _________________________________ Date: _______________

Investigator: _________________________________ Date: _______________

53

APPENDIX B

Demographic Information Form

54

Demographic Information Form

Project Number ______________ Researches: Nannan Li

Myra Beth Bundy, Ph.D.

Eastern Kentucky University

Please fill in the blank or circle the appropriate answer:

1. Your Age: _________ 2. Year of Birth (yyyy) ________________

3. Gender: Male / Female

4. Education: high school / some college / college / graduate school /

5. Occupation: _________________________________

6. How long you have been living in the US: _________________________________

7. Age of your child (as reported on for this study)_____________

8. Gender of your child: Male/Female

55

APPENDIX C

Debriefing Form

56

Debriefing Form

This research project studies a couple of psychological checklists for autism.

Autism is highly variable neurodevelopmental disorder that first appears during infancy

or childhood, and generally follows a steady course without remission. The prevalence of

autism is an approximate of 1 per 110 children in the United States is diagnosed with

ASD in 2011. The number of people diagnosed with autism has increased dramatically

since the 1980s. Also, in the two or more decades since autism was first diagnosed in

China, a growing number of doctors have begun to recognize and diagnose autism in

children. In China, there is only a limited amount of research literature on applications of

different autism measures. Because a dearth of scientific literature in China regarding the

diagnostic features and treatment of autism in comparison to Western societies, it is

important to develop valid and reliable versions of autism measures for use with Chinese

parents living in the United States or China.

This study was designed to evaluate the Questionnaire for Parents or Caregivers

of Childhood Autism Rating Scale – Second Edition (CARS2-QPC) and Gilliam Autism

Rating Scale–Second Edition (GARS-2) for use with Chinese-speaking individuals. The

English versions of the CARS2-QPC and GARS-2 have been demonstrated to be good

(valid and reliable) measures of autism respectively. By comparing Chinese and English

versions of the each questionnaire (correlating their scores), we will be able to evaluate

whether the Chinese translations are as good as original English versions and whether

they can be recommended for use with Chinese-speaking individuals.

Thank you again for your participation. If you have any other questions about this

research project, or would like information about the results we obtained, please contact

57

Dr. Bundy: Myrabeth.bundy@eku.edu, or come by her office in the Cammack building

on the Eastern Kentucky University campus after May, 2012. Further, if you would like a

written summary of the study along with the results, please give your name and address

(or e-mail address) to the investigator. A written summary will be mailed to you once the

study has been completed.

58

APPENDIX D

The original English Questionnaire for Parents or Caregivers of Childhood

Autism Rating Scale – Second Edition (CARS2-QPC)

59

60

61

62

63

64

65

APPENDIX E

The original English Gilliam Autism Rating Scale–Second Edition (GARS-2)

66

67

68

69

70

71

72

73

74

APPENDIX F

The back-translated English Questionnaire for Parents or Caregivers of Childhood

Autism Rating Scale – Second Edition (CARS2-QPC)

75

76

77

78

79

80

81

APPENDIX G

The back-translated English Gilliam Autism Rating Scale–Second Edition (GARS-2)

82

83

84

85

86

87

88

89

90

91

92

APPENDIX H

The Chinese Questionnaire for Parents or Caregivers of Childhood

Autism Rating Scale – Second Edition (CARS2-QPC)

93

94

95

96

97

98

99

APPENDIX I

The Chinese Gilliam Autism Rating Scale–Second Edition (GARS-2)

100

101

102

103

104

105

106

107

108

109

110

APPENDIX J

GARS-2 and CARS2-QPC rating scale comparison in English

between original and back-translation

111

112

113

114

115

116

117

APPENDIX K

Revised GARS-2 and CARS2-QPC rating scale items comparison

in English between original and back-translation

118

119

VITA

Nannan Li was born in Shangqiu , Henan on January 5, 1980. She graduated from

Zhumadian High School in Zhumadian, Henan in 2000. The following fall she attended

Xinxiang Medical University in Xinxiang, Henan and interned in the Henan Provincial

Psychiatric Hospital in 2004-2005, one of the premier clinics in China. She received the

degree of Doctor of Medicine in Psychology in September, 2005. After graduation she

returned to her hometown and began a residency at Zhumadian Psychiatric Hospital from

2005 to 2007. She came to Lexington, Kentucky with her husband, who is currently a

scientist II in the Department of Physiology at University of Kentucky in September,

2007. Currently she is completing her Master’s degree at Eastern Kentucky University

and expects to receive her Master’s of Science in General Psychology in May 2012.